In April of this year, six-year old IC patient, JT McNeil, and his mother, Merri Marden McNeil give moving testimony before Congress on behalf of IC patients and the ICA. Thanks to the McNeil's and the ICA's efforts, IC research receives solid support on Capitol Hill and $1,981,416 in new funding from the National Institutes of Health (NIH).
The NIH IC Clinical Trials Group begins a study on the effectiveness of the oral medications Elmiron® and Atarax® . This study is the first in a series of studies the NIH plans to undertake.
With encouragement from the ICA and Dr. Allen Spiegel, the New Director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the NIH agrees to undertake the ICA's top research priority ---- funding an epidemiology study in the year 2001.
The new "cyberadvocacy" component of the ICA's Web site helps the ICA organize a electronic letter-writing campaign responsible for sending over 300 letters (thus far) to Congress in support of IC research.
Through the generosity of the Fishbein Family Foundation and supporters of the ICA's Pilot Research Program, the ICA is able to fund $147,418 in IC research. This is the largest amount the ICA has been able to give to research in any given year, bringing total direct ICA support for research to more than $1 million over the past 10 years.
Two more exceptional doctors joined the ICA Medical Advisory Board: John Forrest, MD and Daniel Carr, MD. They bring to the Medical Advisory Board additional expertise in men with IC and in pain management.
In addition to our bi-annual National Meetings, the idea emerged this year to host a series of smaller, regional educational forums that would be easier for patients to attend. During 1999, programs were held in New York, California, Pennsylvania, and Ohio. The forums offer up-to-date information on treatment and research to patients and family members. The response from participants is extremely positive. The ICA has been fortunate to have the costs of these programs underwritten by Alza Pharmaceuticals. In 2000, similar programs will be held in Orlando and San Diego, with more planned for the future.
The ICA's Web site is redesigned, updated, and expanded. Now IC patients, doctors, and the general public can instantly access more information than ever about IC. In addition, the ICA adds audio presentations of ICA Regional Forums to the Web site. Other added features include a glossary of IC and medical terms, and an index of medications. The Web site proves to be a tremendous educational and public awareness tool. Currently the ICA Web site receives over 500,000 hits per month. Over 36,000 people regularly use the ICA Web site each month to immediately access quality information about IC.
The ICA increases its emphasis on providing assistance to patients seeking disability assistance from the Social Security Administration (SSA). The ICA continues its partnership with disability attorney, Doug Smith, to develop new resources to help doctors and patients document and present their cases to the SSA. In addition, the ICA dedicates considerable staff and volunteer time specifically to assist patients seeking the disability assistance they so desperately need.
The ICA revises its patient education brochures and created several important new informational fact sheets that include: Finding the Right Physician for You, IC and Pain, the Disability Fact Sheet, and the ICA Treatment Guidelines. In addition, the ICA printed several new brochures including Men and IC.
Thanks in part to a grant from Alza Pharmaceuticals, the ICA enhances its two quarterly newsletters, The ICA Update and ICA Physician Perspectives to bring cutting-edge information to IC patients and health care providers.
The ICA increases public awareness of IC throughout 1999. Over the course of the year, thousands of health care providers, new IC patients, and interested individuals were able to learn more about IC through several publications and articles. One article, "Epidemiology of Interstitial Cystitis: A Population Based Study," from the Journal of Urology confirmed that the number of IC patients in the U.S. was 700,000, 50% higher then previously estimated. Other medical resources publishing articles about IC include Pain Forum (the official journal of the American Pain Society), The Journal of Urology, Journal of Women's Health and Gender Based Medicine, and Society of Women in Urology News. Popular publications and patient-based newsletters carrying stories about IC in 1999 include Family Circle Magazine, Prevention Magazine, Family Urology, The National Vulvodynia Association Newsletter, Fibromyalgia Frontiers, the Fox News Online magazine, ICON (the Alza Pharmaceuticals newsletter), Salon.com online magazine, Mature Living, Women's World, and Dr. Donahue's syndicated newspaper column.
The ICA receives a grant from the Medtronic Foundation for $42,700 to assist with volunteer outreach and training. The one-year grant will allow the ICA to print and send a quarterly newsletter to volunteers; update and improve our volunteer training manuals; design, print and send out new volunteer recruitment brochures; and increase our minority volunteer outreach efforts. These activities will result in a higher quality of service for IC patients.
The ICA is effective in its efforts to educate health care providers about IC. In April, representatives from the ICA attend the American Urologic Association Annual Meeting, the largest urologic convention in the US, held in Dallas. At the meeting the ICA distributes hundreds of packets of materials and introduce ourselves to hundreds of doctors and nurses interested in learning more about IC and the ICA.
The ICA also supports efforts to educate patients and health care providers on an international level through our participation last October in the International IC Conference hosted by the ICA of Germany.
Plans begin for the ICA's Tenth National Meeting scheduled for October 20-22, 2000 in Minneapolis, MN. The conference will be immediately preceded by the International Research Symposium on Interstitial Cystitis, co-sponsored by the ICA and NIDDK. The ICA is very excited to be able to bring the very latest information on IC to health care providers, researchers, and patients.
The ICA is able to invest in the technology necessary to support the growth and continued development of the ICA into the future. Last year, the ICA invested significant resources to keep pace with the demands of changing technology. In 1999 the ICA develops a sophisticated database management system capable of storing important information about patients, donors, physicians, researchers, and volunteers. The new system helps to make the ICA a more efficient, cost-effective organization by allowing automation of several tasks that were once done manually.